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Muttertag

8 May

Mother and Son(Image by Andy415 used under CC 2.0 via)
 

A very happy Mother’s Day to all the wonderful mothers I have had the pleasure of knowing, not least of all my own.

And to those of you who have lost your mothers,

And to those of you who have lost a child,

And to those of you who had to take care of your mothers (and yourselves) much earlier than the rest of us had to,

And to those of you who have tried hard to become mothers despite what neighbors (or politicians) may have said,

And to those of you who have tried hard to become mothers despite what nature ultimately decided,

And to those of you who are not mothers but have raised a child as well as any mother could,

In gratitude and with the deepest respect.

 

 

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Can We Understand What It Is Like To Hear Sound for the First Time?

17 Jan

listen(Image by Jay Morrison used under CC license via)
 
In the 1990s, Cristina Hartmann was one of the first of a few hundred deaf and hearing impaired children in the United States to undergo surgery for a cochlear implant. She has written extensively about the experience of hearing sound for the first time after the implant in her right ear was activated, most recently this month on Quora.com:

My mother was the one who told me, “Raise your hand when you hear something.” That statement left me baffled. What was I looking for? It was a bit like searching for Waldo when you didn’t know what he looked like.

In that tiny, windowless room deep in the large Manhattan hospital, the audiologist began tapping away at her keyboard. Everyone stared at me, even a woman standing in the doorway whom I had never seen before. I felt the heavy weight of expectations on my shoulders. I had to do something. I concentrated very hard, searching for the mysterious, indefinite Waldo. Whenever I felt anything, an itch or a breeze, I raised my hand slowly, searching everyone’s expressions for whether I had gotten it right or wrong. Nobody gave me any confirmation, so I went on guessing. Twenty-five years later, I realize the whole thing was a show that I performed. I knew this was a momentous event, and I didn’t want to disappoint….

As a congenitally deaf child (who was a bit long in the tooth at 6), I had never formed the neural pathways for my brain to even begin processing auditory stimulation. In the fashion of the ostrich, my brain ignored the strange stuff, and I remained as deaf as I had been an hour prior…

It took months and plenty of therapy for her brain to adapt. Thirteen years later, the activation of a second implant, this time in her left ear, proved a more harrowing experience than the first:

As the audiologist began the beep sequence, I burst into tears and involuntarily clenched the left side of my face. She looked up, puzzled. “Why are you crying? You’ve had this before!” she said. The pain was like sparklers going off on the left side of my head. The stimulation, as little as it was, completely overwhelmed me.

Even though I had already laid the neural pathways for auditory stimuli for my right ear, my brain was unprepared for the stimuli coming from the left side. Since my brain had already experienced this type of stimuli, it could process it, but it was still sensory overload. That stuff hurts. It took me months to acclimate myself to the new implant, but in the meantime, I cringed every time I turned it on. As I said, laying new neural pathways takes work.

Hartmann was later told by the mother of another patient, “Once they started with the beeps, [my daughter] screamed and cried.”

Such narratives exist in stark contrast to the YouTube videos of newly activated implant users laughing and smiling—and, in one case, crying for joy—that have been bouncing around the Internet with far greater frequency. While both narratives provide important information for those considering cochlear implants for themselves or their children, they are also an important contribution for the greater public in our understanding of what it means to be deaf.

It makes sense that crossing out of the world of silence into the world of sound is just as disorienting as its opposite. A hearing person with a middle ear infection strains to perceive the sound of speech, and a deaf person with a new cochlear implant strains to tune out noise pollution: the knocks of a radiator in another room, car doors slamming on the street, wind, footsteps, not to mention the countless background beeps and clicks of the Digital Age. After all, when a baby leaves the womb, she does not instantly adapt to her new home. She comes out crying. There’s too much light and not enough warmth. And, if she is not deaf, there is too much sound.

Speech is no less difficult to learn than Sign language, just as English is no less difficult than Chinese. The ease with which we learn one form of communication or the other depends entirely upon our personal experience and place in the world. For those of us who have grown up hearing speech, the viral videos communicate something very different than for those who grew up in Deaf culture.

While the experiences of utter delight portrayed in the videos are valid, their popularity contributes to an oversimplification of the issue. Watching a toddler smile upon finally hearing his mother’s voice for the first time sends a very strong subliminal message: Being deaf must be worse than not being deaf, and therefore anyone would want to join the world of the hearing. But the general public as an audience is already biased toward the hearing world’s standards of happiness. We are moved by the sound of loved ones uttering our names but not at the image of them signing our names because our culture does not rely on—and therefore does not highly value—Sign language.

This what inspired Lalit Marcus, the daughter of deaf parents and an active promoter of Deaf culture, to pen an article for The Wire titled, “Why You Shouldn’t Share Those Emotional ‘Deaf Person Hears for the First Time’ Videos”:

I want to make it clear that I don’t have a problem with people who choose to get cochlear implants. Medical decisions are painfully personal… I’m all for people making the health choices they think are best for them. What bothers me are the maudlin videos produced out of someone’s intense, private moment that are then taken out of context and broadcast around the world. What bothers me is how the viewer never learns how the individual came to the decision about their implant, which factors they took into account, whether their medical insurance covered it. Sometimes we don’t even learn their names.

This gives me pause. I consider the clip of me removing my casts to look at my newly lengthened legs, which featured 15 years ago in the HBO documentary Dwarfs: Not A Fairy Tale and last year on Berlin’s public station. The moment was simply joyous—as was the moment I stood up, let go of my friend’s hands and took my first steps—but the story behind it was abundantly complex. Which hopefully both documentaries portray.

I have endeavored to communicate that through this blog and all the media work I have done for the past 20 years.

Limb-lengthening and cochlear implant procedures are markedly different in several ways. Limb-lengthening, for example, does not threaten to endanger another language. But it does threaten to break ranks in the dwarf community through the controversy of altering versus accepting extraordinary bodies. Both procedures have proven to evoke vitriol among their proponents and detractors.

Hartmann reveals:

Most of my deaf friends were good about my CI. They didn’t mind it, except for the fact that my speech therapy cut into play time. That being said, people in the Deaf community felt free to make pointed and derisive comments about my CI. I still get these comments, even almost 24 years after my surgery. To some, I’ll always be a CI-wearer and a turncoat.

The CI advocates aren’t any better, if not worse.

I have very pleasant relationships with many parents of implanted children and CI users. I, however, have also been called a failure because I still use [American Sign Language] and don’t speak perfectly. I’ve also seen a mother run across a room to prevent her child from signing to another deaf child. I’ve been scolded for making gestures and looking too “deaf.”

The debate, of course, is ongoing.

But for those of us not faced with opting for or against a cochlear implant, we are faced with the challenge of overcoming our bias and remembering that Deaf culture is no less valid than the hearing culture we inhabit. Especially when those admittedly tantalizing videos wind up in our Facebook feeds.

 

 

What the Stubblefield Rape Case Means for Disability Rights

22 Nov

Words as skin(Image by Maurizio Abbate used under CC license via)

 

When people continue to believe in a method that has repeatedly been proven not to work, what harm can it do? Does it matter that an herbal supplement is ineffective if someone who uses it says it truly makes them feel better? Does it really matter whether or not primates can learn American Sign Language or parrots can learn to read English out loud if it makes animal lovers so happy to believe that they do?

Misinterpreting animal communication can of course be dangerous. In 2007, a Dutch woman who insisted she was bonding with an ape at her local zoo refused to believe the primatologists’ warnings that staring directly into a male gorilla’s eyes and showing one’s teeth—i.e., smiling—triggers aggression. She refused to believe this even after the gorilla broke out of his enclosure and attacked her.

But what if someone assumes a living person is communicating with them? What if they assume said person is confiding their wishes and life choices in them? What if they can do so because we don’t share a common language with the person they claim to be speaking for?

Facilitated Communication, a.k.a. “FC,” is a method developed in the late 20th century to help severely disabled people with little or no speech communicate with others. By supporting their patient’s hand or arm, a trained facilitator could theoretically help the patient type out sentences, thereby “unlocking” intelligence previously obscured. The method was considered a breakthrough for patients with diagnoses ranging from severe autism to severe cerebral palsy. It was touted as a miracle for their loved ones, who understandably wanted nothing more than to be able to hear their thoughts, wants and needs.

Anna Stubblefield is a philosophy professor and disability rights advocate who, until recently, taught seminars about FC at Rutgers University. What she did not teach her students is that FC has been condemned over the past three decades by the American Psychological Association, the American Association of Pediatrics, the American Association on Intellectual and Developmental Disabilities, the Federal Trade Commission, and the New York State Department of Health, among others. Double-blind testing generally reveals the facilitator to be subconsciously guiding their patient’s typing, rather than simply supporting it. This year Sweden banned FC in schools nationwide.

Professor Stubblefield adamantly rejects the classification of FC as a pseudoscience. Her mother was a pioneer of the technique. When one of her seminar students asked her in 2009 if it could perhaps help his severely disabled young adult brother—referred to in the press as “D.J.”—she agreed to treat him. A 20-page report in The New York Times Magazine chronicles Stubblefield’s increasingly intimate relationship with her patient, eventually culminating in her announcement in 2011 to his family that she and D.J. were in love. She planned to leave her husband and two children for him. As his legal guardians, D.J.’s family told her she had overstepped her boundaries and requested she leave him alone. When she did not, they eventually filed charges against her. They testified that gradually Stubblefield’s claims to D.J.’s interests and values—typed out in their FC sessions—had begun to sound suspiciously like things she would want him to say. Stubblefield was sentenced last month to 40 years in prison for sexual assault.

Another proponent of FC, Martina Susanne Schweiger, was convicted last year in Queensland, Australia for performing sex acts on a 21-year-old patient whom she believed had reciprocated his love for her via FC.

I’ve written before about widespread prejudices against disabled people and how often it denies us our sexuality. But disabled people also suffer sexual abuse at rates far higher than the general population. Most are taken advantage of by their family members and/or caregivers. Stubblefield and the remaining proponents of FC argue that their critics are ableist for denying D.J.’s capacity for intellect and intimacy. The prosecution argued that Stubblefield is ableist for assuming she knows what D.J. wants.

The desire to be the next Miracle Worker is understandable and so often noble. Who doesn’t want to help those in need? And the lure of the controversial in the pursuit of justice is not uncommon. From Jodie Foster and Liam Neeson in Nell to Sean Penn and Michelle Pfeiffer in I Am Sam to Adam Sandler and Don Cheadle in Reign Over Me, Hollywood is rife with love stories and courtroom dramas about a misunderstood outcast who has finally found the one open-minded hero who understands him, believes in him and then must fight the cold-hearted, close-minded authorities from keeping them apart.

Yet red flags should go up whenever there is a risk that a self-appointed advocate is putting words in someone’s mouth, no matter which side that advocate thinks they are on. Particularly when their patient or client belongs to a highly marginalized minority.

News of this case has elicited many head-shaking responses along the lines of, “Well, they all sound nuts.” One of the jurors told NJ.com, “I was like…‘You’re going to leave your husband and your kids for someone like this?’” Disability rights advocates rightly bristle at the infantilizing of D.J.—not to mention the salacious headlines that seem obsessed with his personal hygiene—while ultimately declaring the case incredibly sad. Yet we rarely use “nuts” or “sad” to describe male teachers convicted of seducing students unable to give consent. We describe them as predators or abusers.

Abusers of course rarely think of themselves as such. Child molesters are often convinced their victims were flirting with them. Few would consider themselves sadistic. Most are simply skilled at rationalizing their behavior to themselves. But regardless of what they believe their intentions are, abusers by definition deny others power in pursuit of their own.

The Stubblefield case and the Schweiger case highlight a very uncomfortable fact for disabled people everywhere: that some of the caregivers and activists working and sometimes fighting on our behalf are doing it to feed a savior complex. And anyone with a savior complex is not truly listening to those they claim to be helping.

Addressing this problem becomes increasingly difficult when we consider how very young the concept of disability rights is over the course of human history. Living in any other era, most of us would have been abandoned by our families in asylums or elsewhere. Ancient Spartans advised throwing us off cliffs after birth. Some modern philosophers, such as Prof. Peter Singer, still advocate infanticide for some. Awareness of all this often makes us feel compelled to be eternally grateful to anyone who offers us any sort of support or help, regardless of whether or not it is truly helpful or respectful of our boundaries.

That we do not yet have the means to access D.J.’s thoughts and desires is indeed tragic. But opposition to FC does not mean we damn severely disabled people to the realm of hopelessness. On the contrary, accepting criticism of FC can only help to improve upon the ways in which researchers develop better practices and technologies. Relying on discredited methods would not have gotten Stephen Hawking his voice. Annie Sullivan prevailed with Helen Keller because she not only relied on rigorously tested methods but also shed her status as Keller’s sole communicator by enrolling her in an interdisciplinary program at the Perkins School. The ability to kill your darlings is an ingredient of innovation.

And any true investment in disabled people and the methods that best assist them must be accompanied by the credo activists began using around the time D.J. was born: Nothing about us without us.

 

 

Cultural Appropriation vs. Cultural Exchange

25 Oct

(Via)

From the Archives

 

As Halloween approaches along with all the stomach-turning caricatures of minorities and foreigners, I find myself repeating the same question over and over: When is it okay to wear or adopt something from a culture you don’t belong to?

Obviously, the most offensive appropriations rely on inane stereotypes most people I know would never go near. But this doesn’t mean that globe-trotting, multicultural enthusiasts—like myself—can do no wrong.  Since the 1960s, upper/middle class whites dabbling in other cultures has been celebrated under the banner of “Diversity!”  But from the point of view of certain cultures, Nigerian writer Jarune Uwujaren argues, it’s often just another chapter in the long tradition of Westerners “pressing their own culture onto others and taking what they want in return.”  American Indians do not appreciate headdresses used as fashion statements.  Hindus do not applaud non-Hindus flaunting bindis.  And Mexicans don’t enjoy seeing Day of the Dead re-appropriated as just another Halloween costume. 

Yet the Mexican Día de los Muertos is the result of Catholics adopting what was originally a pre-Columbian tradition.  Modern German children meanwhile have taken to celebrating Halloween, much to their parents’ chagrin.  There isn’t a holiday on earth that hasn’t been adapted from something else, leading atheist comedian Mitch Benn to observe, “If only practicing Christians can celebrate Christmas, then only Vikings can say, ‘Thursday.’ ” 

Indeed, intercultural contact always leads to intercultural mixing. Nowadays brides in China often wear two wedding dresses on their big day: a traditional Chinese red dress and a traditional Western white gown.  When a friend from Chengdu married her German husband in Berlin, she turned this trend on its head, wearing a Western designer dress that was red and then a cheongsam that was white.  Borders move and cultures blend constantly throughout history, often blurring the line between cultural appropriation and cultural exchange.

For this reason, it is important to remember that absorbing the fashions and customs of another culture is not always offensive.  But it is just as important to remember that it is not always open-minded, either.  After all, colonial history is rife with Westerners who filled their homes with foreign gear and lectured others about the noble savage.  Among the most ardent fans of Tibetan Buddhism, American Indian animism, and Norse mythology were the Nazis.  

We all love to show off what we’ve learned and delving into another culture can be enriching. But minorities tend not to like it when an outsider appoints herself an expert and lectures more than she listens.  Or thinks that listening to minorities is a heroic act, rather than common courtesy.  Visiting another country feels special when we’re the first of our friends and family to go, but there is no guarantee we’ll truly be acquainted with the culture.  Thanks to language barriers and the insular nature of expat bubbles and tourist tracks, it is fairly easy to study or even live in another culture for several years without getting to know a single person from that culture.  (Waiters and receptionists don’t count.)  

Whether venturing to the other side of the world or the other side of the tracks, it is always much easier to buy something, taste something, or get a bit of history from a book than to talk to someone from another culture.  Because books and merchandise can’t talk back.  They won’t call us out if we make false assumptions.  If we do actually strike up a conversation with someone from another ethnic group, whether Liverpudlian or Laotian, the temptation to flaunt the experience like a feat of greatness can be overwhelming. Jarune Uwujaren wrote about this pervasive temptation last month:

I remember that at my sister’s wedding, the groom – who happened to be white – changed midway through the ceremony along with my sister into modern, but fairly traditional, Nigerian clothes.

Even though some family members found it amusing, there was never any undertone of the clothes being treated as a costume or “experience” for a white person to enjoy for a little bit and discard later. He was invited – both as a new family member and a guest – to engage our culture in this way.

If he had been obnoxious about it – treated it as exotic or weird or pretended he now understood what it means to be Nigerian and refused to wear Western clothes ever again – the experience would have been more appropriative.

But instead, he wore them from a place of respect.

Appreciating the beauty in other cultures is always preferable to xenophobia.  Enjoying a trip abroad that happened to involve minimal interaction with the locals is perfectly fine.  But drawing attention to oneself for reveling in the mysteriousness of a culture is to revel in its supposed Otherness.  Whenever an entire culture is reduced to its exoticism, it becomes nothing more than an accessory or a toy – not a sign of cultural understanding.  

And while adopting a sacred custom “just because it looks cool” can be inconsiderate, imbuing our reasons for adopting a trinket with too much meaning can also make a native roll their eyes.  It’s one thing to buy a handbag on a trip to Tokyo simply because it’s beautiful.  A Japanese woman is buying it simply because it’s beautiful, after all.  But it’s another thing to flaunt it like a badge of enlightenment. 

The blog Hanzi Smatter documents and explains the snafus and utter nonsense that so often result when Westerners get tattoos of Chinese characters copied off the Internet.  Such incidents demonstrate that vanity is often mistaken for art.  We’re all a little vain, yet the difference between art and vanity is crucial because vanity is an indulgence, not a challenge or an attempt to communicate.  When Dita von Teese donned yellowface for a London performance titled “Opium Den,” fellow burlesque artist Shanghai Pearl wrote:

I am not saying artists should not tackle controversial or challenging subjects. However, if we choose to take on challenging material, we should be prepared to have challenging conversations. I absolutely believe that art will not suffer from sensitivity. Sensitivity should make us work harder, research more, and think more. Art can only benefit from that.

Indeed, nothing suffers from genuine sensitivity.  The lesson from colonialism is not to stop exploring the world and reading about it, but to always bear in mind that there can be no cultural understanding without dialogue.  When deciding whether to adopt a tradition or style from another culture, we should consider what several people from that culture have to say about it.  Because there are no cultures without people.

 

 

Originally posted November 3, 2013

Content Warnings and Microaggressions

20 Sep

Grunge Warning Sign - Do Not Read This Sign

(Image by Nicolas Raymond used under CC license via)

 

There’s a heated debate going over at The Atlantic over trigger warnings and microaggressions. For those less familiar with online minority rights debates, trigger warnings originated as labels for video or texts depicting graphic violence, often sexual, that could be triggering for survivors of assault suffering from PTSD. They have since evolved into “content warnings,” used to label any video or text containing arguments, comments, humor or images that marginalize minorities. I most recently ran into one preceding a beer ad in which two brewers tried to joke about never wanting to have to do anything so humiliating as dressing in drag in the red-light district in order to earn money.

Jonathan Haidt and Greg Lukianoff have argued that content warnings have led to “The Coddling of the American Mind,” a culture of silencing, wherein too many are afraid to initiate dialogue on these issues, lest they offend. They criticize restrictive speech codes and trigger warnings, and suggest universities offer students free training in cognitive behavioral therapy in order to “tone down the perpetual state of outrage that seems to engulf some colleges these days, allowing students’ minds to open more widely to new ideas and new people.”

“Microaggressions” is a term invented in 1970 by Harvard professor Charles M. Pierce to refer to comments or actions that are usually not intended as aggressive or demeaning but nevertheless do contribute to the marginalizing of minorities. Examples would be certain physicians being addressed as “Nurse” at the workplace. Or nurses, secretaries, cashiers, and storage room workers constantly hearing the widespread Western belief that low-skilled jobs deserve a low degree of respect. Or men still being expected to prove their worth through their career and never their emotional fulfillment. Or lesbians being asked if they’ve had “real sex.” Or anyone hearing from magazines, sitcoms or even loved ones that body types like theirs are something to avoid ending up with or hooking up with.

Microaggressions are the essence of insensitivity and they highlight the widespread nature of many prejudices about minorities. I analyze them all the time on this blog, without labeling them as such. Finding blogs that feature them in list-form can be done with little effort.

Citing a sociological study by professors Bradley Campbell and Jason Manning, Connor Friedersdorf has argued that calling out microaggressions on social media sites has led to a culture of victimhood, wherein the emotions of the offended always matter more than the perpetrator’s intentions. Victimhood culture is “characterized by concern with status and sensitivity to slight combined with a heavy reliance on third parties. People are intolerant of insults, even if unintentional, and react by bringing them to the attention of authorities or to the public at large.”

Cue the overemotion. Simba Runyowa rightly rebuts that many of Friedersdorf’s examples of hypersensitivity are cherrypicked, but then goes on to deny that anyone would ever want to be seen as a victim. (Not only do most petitioning groups—whether the majority or the minority—claim to be the victim of the other side’s moral failings and undeserved power, but it appears he has never tried to explain what it’s like to have a rare condition, only to be interrupted by the insistence, “I think I have that, too!”) On the other side, Haidt, Lukianoff and Friedersdorf have attracted plenty of support from those who are only too happy to believe that college campuses and the blogosphere today are ruled by the PC police, rendering such places far worse than Stalinist Russia.

I rarely issue content warnings on videos or quotations or any examples of bigotry I analyze on this blog. My primary reason is that a majority of the content we consume every day is arguably misogynistic or heteronormative or ableist or racist or classist or lookist. This does not at all mean that we should not address those problems, but demanding “warnings” on whatever has marginalized me leaves me open to criticism for not doing the same for all the other injustices I may not see.  As both a Beatles fan and a social justice blogger, I will always prefer to read or hear a comprehensive critique of John Lennon’s ableism than to see warnings on his biographies.

And I don’t label microaggressions as such because I agree with Friedersdorf that the word seems at odds with its definition. Insensitivity can be very hurtful. It can contribute to feelings of alienation by functioning as a reminder of how millions of people might think of you. But it is not aggressive. Highlighting, questioning and debating ubiquitous prejudices, stereotypes and traditions is crucial to human progress. Mistaking ignorance for hostility, however, is an obstacle to it.

Would it be accurate and productive to post something like this?

Microaggression: Having to hear yet another parent talk about how thrilled they are to have been able to give birth “naturally.”

(Avoiding C-section is never an option for women with achondroplasia like me.)  And would it be accurate and productive to something like post this?

Microaggression: Having to hear yet another childfree blogger brag about how great it is to have the time and energy to do things I’ll never be able to do like hiking or biking, let alone if I have kids.

Would it be more practical to tweet such complaints rather than pen an extensive article about the intricacies of the problem because few have time to read the particulars of considering parenthood with achondroplasia? Would posting them on a site featuring microaggressions serve as a much-needed wake-up call, convincing the perpetrators to see the issue from my perspective, or would it put them on the defensive? Would it spark dialogue or shut it down? Are the comments that marginalize my experience veritably aggressive? Feel free to share your thoughts in the comments.

But whether we think people on either side of the majority vs. minority debates are too sensitive or insensitive, we should be aiming for dialogue over exclamation points.

 

 

We Gotta Watch Our Language When It Comes to End of Life Debates

13 Sep

Jerzy body

(Image by Ekaterina used under CC license via)

 

On Friday the British Parliament resoundingly struck down a bill that would guarantee its citizens the right to physician-assisted death. Yesterday California’s legislature voted to make it the sixth state in the U.S. to legalize it.

Robust, nuanced arguments have been made for and against physician-assisted death for terminally ill patients, and none of these arguments could be successfully summarized within a single article. This is why a conclusive stance on the issue will never appear on this blog. It is nothing but moving to hear the deeply emotional pleas from those in the right-to-die movement who have thought long and hard about the prospect of death, who feel empowered by having some choice when facing down a daunting fate, who don’t want to find out which of their loved ones may turn out to be unskilled at care-giving. And it is equally moving to hear the experiences of those working in hospice and palliative care who face the approach of death every day with the determination to make it as minimally painful and emotionally validating as possible for all involved.

However, despite the emotional validity of both sides, there are tactics the right-to-die movement should avoid if it does not wish to make our culture more ableist than it already is. Openness about end of life decisions can shed light on a subject previously cloistered away, but the more the right-to-die movement celebrates the idea of ending someone’s life before it transforms into a certain condition, the less willing the public may be to engage with and invest in those who live in that condition.

Which is why no one should call physician-assisted death “Death with Dignity,” as lawmakers in Washington, Oregon, and New York have done. The implication that anyone who opts out of assisted death might live an undignified life is reckless and arrogant. A patient declaring the prospect of invasive life-saving interventions “too much” is fair. A writer declaring the quality of life of those who opt for them “pathetic” is ostracizing. It insults not only those enduring late-life debilitation, but the everyday conditions of many, many disabled people of all ages around the world.

Even today, when so many movements push to integrate disabled people into the mainstream, the average person is generally isolated from the reality of severe deformity, high dependence, and chronic pain. This isolation feeds fear and is therein self-perpetuating. As opponents have pointed out, many right-to-die arguments quickly snowball, equating terminal illness with chronic illness and disability, and portraying all three as a fate worse than death. Hence the name of the New York-based disability rights group Not Dead Yet.

Vermont’s recent law, the Patient Choice and Control Act, bears a far less polemic name than the others currently on the books. That’s a start. Experts are divided as to whether the current openness about end of life decisions in the U.S. has led to more terminally ill Americans considering and opting for hospice and palliative care. Regardless, both sides should be encouraging well-informed discussions that honor a patient’s right to voice his beliefs based on personal experience, and a disabled person’s right to not be further marginalized by a culture that has historically feared her existence.

 

*Note: I use “physician-assisted death” and other terms in deference to World Suicide Prevention Day this past Thursday and the media guidelines from the Center for Disease Control, which discourage use of the word “suicide” in headlines to avoid contagion.

 

What Do You Think of When You See the Word “Healthy”?

6 Sep

Up close Star makeup mac, urban decay(Image by Courtney Rhodes used under CC 2.0 via)
 
In late 2013, journalist Katie Waldman examined the juicing trend, which was cropping up in the corners of Western society where there is a heavy focus on modern notions of “natural and organic” (think anywhere from Berlin’s Prenzlauer Berg to Burlington, Vermont and Berkeley, California) as well as in those where people competitively strive to follow the latest fashions in health and beauty (think the high-earning sectors of London, Manhattan or Los Angeles). Lifestyle writers have declared two years later that juicing has staying power, despite Waldman’s disturbing findings. Along with little to no evidence that cleansing the body with juice can be physically beneficial, she revealed that the language of most detox diets echoes the language used by those struggling with disordered eating – i.e., the idea that most of what the masses eat is on par with poison and you’re a bad person if you don’t purge it. She writes:

After days of googling, I still have no idea WTF a toxin is… Cleansing acolytes use the word toxin loosely, as a metaphor for our lapsed lifestyles…. The problem with this way of thinking is that food and weight are not matters of morality. Thin is not “good,” carbs are not “bad,” and in a world of actual pressing political and social ills, your dinner plate should not be the ground zero of your ethical renewal.

I’m neither a supporter nor an opponent of juicing in particular. Anyone should drink whatever they want to drink. But Waldman made a fantastic point about the way the upper and middle classes in the West so often believe one’s health to be a sign of one’s morality.

This idea is hardly new. The eugenics craze of the 19th and 20th centuries—that culminated with the Nazis exterminating “degenerates”—involved Fitter Families contests held at county fairs wherein judges handed out trophies to those deemed to have the best heritage, skin color, and tooth measurements. Professor Alan Levinovitz argues in Religion Dispatches that these attitudes have survived on into the present, altered only ever so slightly: “The sad thing is, it’s really easy to judge people on the basis of what they look like. We have this problem with race. In the same way, it’s really easy to look at someone who’s obese and say, ‘Oh look at that person, they’re not living as good a life as I am. They’re not as good on the inside because I can tell their outside isn’t good either.’ ”

Do we as a culture believe that being “healthy” is about appearance? Dieting often dictates that it’s about behaviors measurable through appearance. Psychologists agree to the extent that their notions of “healthy” are about behavior, but they also frequently intersect with notions of being “good.” But is being “healthy” about being brave, honest, generous and humble? Physicians would generally argue it’s about staving off death. Right-to-die advocates would argue it’s about quality of life over longevity. Is being healthy a matter of what scientists decide? Ed Cara found earlier this year that weight loss does not lead to happiness. Is happiness a measure of being healthy? Or are you only healthy if you suffer for it? Concepts of “healthy” vary vastly from person to person, and across cultures. Is that healthy?

In The Princess Bride—probably the Internet’s second-most quoted source after Wikipedia—the hero cautions, “Life is pain. Anyone who says differently is selling something.”

Yet the villain says, “Get some rest. If you haven’t got your health, you haven’t got anything.”

Whether you agree with any or none of the above, leave me your thoughts on the meaning of “healthy” either in the comments or via an e-mail to paintingonscars[at]gmail.com

 

 

Happy Birthday, ADA!

26 Jul

 

This week marks the 25-year anniversary of the passing of the Americans with Disabilities Act. As others have noted, the law was ground-breaking not only because of its international ripple effect, but because it recognized disability not as an issue of health, but of human rights.

Author of the bill, Robert L. Burgdorf, Jr. writes in The Washington Post why this was so necessary:

People with disabilities were routinely denied rights that most members of our society take for granted, including the right to vote (sometimes by state law, other times by inaccessible polling places), to obtain a driver’s license, to enter the courts and to hold public office. Many states had laws prohibiting marriage by, and permitting or requiring involuntary sterilization of, persons with various mental or physical conditions, particularly intellectual disability, mental health conditions and epilepsy. A number of states restricted or denied the right of people with mental disabilities to enter into contracts. Several U.S. cities, including Chicago, Columbus and Omaha, had what became known as “ugly laws” that banned from streets and public places people whose physical condition or appearance rendered them unpleasant for other people to see. These laws were actually enforced as recently as 1974, when a police officer arrested a man for violating Omaha’s ordinance.

In some instances, discrimination threatened the very lives of individuals with disabilities: Lifesaving medical treatments that would routinely have been made available to other patients were denied to patients with disabilities; in 1974, the New York Times cited an estimate that unnecessary deaths of babies with disabilities in the U.S. resulting from withholding of medical treatment numbered in the thousands each year.

Things have improved substantially, which is cause for celebration. But not complacency. Which is why NPR’s article “Why Disability and Poverty Still Go Hand-In-Hand” is well worth your time, as is the above TED Talk by the late, great Stella Young, whose unexpected death last winter was a tremendous loss to the disability rights movement and to anyone who enjoys a good dose of sarcasm with their social critique.

 

 

Difference Diaries Wants to Hear from You

19 Jul

Copyright Difference Diaries

 

I have recently become the Director of Educational and Multimedia Outreach at the Difference Diaries, and today marks the launch of the Difference Diaries Blog. We want submissions and we want them now.

The Need. This week Freeburg High School in Illinois jubilantly voted down a petition by Little People of America to retire their school mascot, the Freeburg Midgets.

Such incidents are hardly isolated. Dwarfs rarely make the news, and when we do, we often wish we didn’t. Two summers ago Slate magazine, one of my favorite socio-political periodicals geared at young adults, kicked off a blog about Florida with an opening article called, “True Facts About the Weirdest, Wildest, Most Fascinating State.” Among the facts that apparently render the Sunshine State weird are the python-fighting alligators and “a town founded by a troupe of Russian circus midgets whose bus broke down.” On the day of its release, Slate ran the article as its headline and emblazoned “A Town Founded By Russian Circus Midgets” across its front page as a teaser.

Face-palm.

Here’s the thing about dealing with all this. You get used to it, but not forever and always. Sometimes it rolls off your back, sometimes it hits a nerve. This time, seeing a magazine as progressive as Slate brandish RUSSIAN CIRCUS MIDGETS on its front page while leaving disability rights out of its social justice discussion brought me right back to college, where friends of friends called me “Dwarf Emily” behind my back and someone else defended them to my face. Where classmates cackled about the film Even Dwarfs Started Off Small—“because it’s just so awesome to see the midgets going all ape-shit!”—but declined my offer to screen the documentary Dwarfs: Not A Fairy Tale. Where a professor was utterly outraged that her students didn’t seem to care about immigration rights or trans rights, but she never once mentioned disability rights. Where an acquaintance asked to borrow my copy of The Curious Lives of Human Cadavers, but awkwardly turned down my offer to lend her Surgically Shaping Children. Where roommates argued vociferously that they would rather be euthanized than lose the ability to walk. Where jokes about dwarf-tossing were printed in the student newspaper.

I won’t go into certain crude comments that involved me personally, but I will say that when a friend recently, carefully tried to tell me about how shocked he was to find a certain video of dwarfs in a grocery store, I cut him off and said, “Lemme guess, it was a dwarf woman porn video? That’s one of the top search terms that bring people to my blog.”

This is not to ignore all those I’ve met who, despite their lack of experience with disability, ask carefully constructed questions and consistently make me feel not like a curious object but like a friend who is free to speak her mind about any part of her life experience. And some young adults are doing awesome work for disability rights and awareness. But when a journalist and mother of a disabled twentysomething recently said to me, “No one wants to talk about disability rights – it’s not seen as sexy enough,” I knew exactly what she was talking about.

Maybe this is just a matter of my growing up, leaving the cocoon of childhood and finding out how uncaring the world can sometimes be. But ableism among young adults in the form of silence and/or sick fascination is a lot more prevalent than many would like to admit. And why does it have to be? Are physical differences truly not sexy enough? Is it because we associate disabilities, diseases and related issues—like caregiving—with older people and with dependence? Dependence is usually the last thing to be considered cool. But does it have to be?

The Means. As a non-profit organization, Difference Diaries aims to ignite ongoing conversation that will contribute to better lives for those living with defining difference as well as friends, families, and perfect strangers who “just never thought about it.” The young adults who share their stories offer real insights and an opportunity for viewers and readers to know a little more about “what it’s like.”

We focus on conditions as diverse as the individuals living with them including: cancer, hemophilia, dwarfism, sickle-cell anemia, albinism, facial deformity, blindness, HIV, amputee, hemangioma, vitiligo, diabetes, renal disease, Crohn’s disease, cystic fibrosis, cerebral palsy, OCD and more.

This is why we want to hear from you. We are seeking blog submissions about living with Difference as a young adult. Prospective bloggers should consider: What does Difference mean to you? What is your personal experience of being Different? What has to be explained most often at work, school, out in public? What would be the most helpful thing for people to know about your Difference? How would you like to see society improve in how it handles Difference?

Send us your submissions via e-mail to info[at]differencediaries.org

 

 

Why Do Names for Minorities Keep Changing?

14 Jun

midget not wanted(Image by CN used under CC 2.0 via)

 

I’ve been writing about the word “midget” more than usual this month, thanks to an Irish public service announcement and then GoogleTranslate. The taboo nature of the word in the dwarf community is almost amusing when we consider that the world’s largest dwarf advocacy organization, Little People of America, was originally named Midgets of America. No lie. (You can read about why I feel that the change was hardly an improvement here and why others do as well here.)

Minority names have been changing a lot throughout the last century. This social pattern has been dubbed the Euphemism Treadmill by psychologist Stephen Pinker. Toni Morrison has pointed out that it’s all about power: “The definers want the power to name. And the defined are now taking that power away from them.” But as names for minorities keep changing, many laypeople keep complaining about the seemingly convoluted nature of of it all:  

“Can’t they just stick to a name and be done with it?”

“Why should I have to be careful if they’re going to be so capricious about it?”

“It seems like they’re just looking for us to slip up so they can call us out!”

It’s not hard to understand where this frustration comes from. No one likes being accused of insensitivity for using a word they had thought was in fact accurate and innocuous. But rarely does anyone ask why the names change.

In 2010, President Obama signed Rosa’s Law, classifying “intellectually disabled” as the official government term to describe what in my childhood was referred to as “mentally retarded.” “Mentally challenged” and “mentally impaired” were other terms suggested and used in PC circles in the 1990s. Already I can sense a good number of my readers wondering whether these changes were truly necessary. I can also sense, however, that few would wonder whether it was necessary to abandon the terms “idiots,” “morons,” and “imbeciles” to refer to such people.

“Idiot,” “moron,” “imbecile,”  and “dumb” were all medical terms before they were insults, used by doctors and psychologists across the Anglophone world. But gradually laypeople started using them to disparage any sort of person they disagreed with. And now this is their only purpose. Instead of getting all of us to stop using these words as insults, the medical minorities have stopped accepting them as official names.

The names for psychiatric disorders and developmental disabilities are particularly prone to being re-appropriated by the mainstream to describe behaviors and tendencies that barely resemble the diagnoses. “Sorry, I wasn’t listening,” I once heard a colleague apologize. “I have such ADD today.”

“I think you’re becoming pretty OCD,” quipped a friend upon perusing my books, which are strictly organized by size.

“That movie kept going back and forth. It had no point! It was so schizophrenic.”

For over 10 years now, psychiatric researchers and patients have been working to abandon this last one. Using “schizophrenic” to describe anything that oscillates between two opposing views or behaviors can easily lead to widespread ignorance about the intricacies of the condition. “Psychosis susceptibility syndrome” is one proposed replacement, but the ubiquity of “psychotic” in common parlance may prove to be equally problematic. “Salience syndrome” was the term most preferred by patients participating in a survey at the University of Montreal and was published in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders in 2013.

This is the choice we have about labels for minorities: We either stop using minority labels to insult people, or get used to minorities asking us to use different labels to refer to them.

But if only it were that simple. Getting people to abandon marginalizing terms for minorities without fighting about it is as difficult as the word “political correctness” itself. There are two reactions all too common in any given conversation about political correctness and they both invariably botch the conversation:

  • Libertarian Outrage: “You can’t tell me what to say!  I can call anyone what I wanna call ’em and it’s their own fault if they’re upset!”
  • Liberal Outrage: “I’ll humiliate you for using an old-fashioned term because PC is all about competition and it feels cool to point out others’ faults.”

Both reactions are based on a refusal to listen and a readiness to assume the worst of the other side. Plenty of anti-PC outrage is fueled by the belief that any discussion about names and language is hot-headed and humorless, and plenty of liberal bullying is fueled by the belief that honest-to-goodness naiveté is as morally objectionable as outright hostility.

Political correctness is not a competition, and if it were, it would be one that no one could win. A human rights activist may be an LP with SAD who is LGBTQIA and know exactly what all those letters mean, but they may not know that “Lapland” and “Fräulein” are now considered offensive by the people once associated with them. And it’s less likely they know about the taboo term in German for the former Czechoslovakia.

And as someone who’s spent her life having to decide how she feels about “midget” and “dwarf” and “little person,” I can tell you that attitudes are far more important than labels. Because even if the word often matches the sentiment, this is not always the case. There’s a difference between the stranger who told my father when I was a kid, “She’s an adorable little midget!” and the coworker who told my cousin recently, “The best thing about Game of Thrones is getting to laugh at that midget!” 

I will always prefer to have an in-depth discussion with someone about the meaning of dwarfism than to call someone out for using a certain word.  I will always prefer to hear someone earnestly ask me how I feel about a certain word than witness them humiliating someone else for uttering it.

Too often these discussions are diluted down into simple lists that start to look like fashion do’s and don’ts, and this is perhaps the gravest insult to the noble intentions of those who kick-started the PC movement. As one progressive blogger pointed out years ago in The Guardian, her lesbian parents are firm supporters of trans rights and, up until recently, used the word “tranny” without any idea that it is widely known among trans people as a pejorative. Too much sympathy for the couple’s ignorance could be harmful. When the mainstream insists that no one should be expected to know about newly taboo terms for minorities, it implies that no one should be expected to be listening to the human rights conversations that are going on about these groups. But conversely, too little sympathy for sheer ignorance is equally unproductive.

Because bigotry is not ignorance. As a wise man said, bigotry is the refusal to question our prejudices.   

 

 

When It Comes To Health, Who Should Minorities Trust?

12 Apr

Medication diet squircle(Image by Barry used under CC.20 via)

 

At the beginning of this year, I underwent orthopedic surgery and rare complications immediately arose from it, causing me to take three months of sick leave. In that time, both my country of origin and my country of residence experienced outbreaks of measles that have set the Internet ablaze with raging arguments about medicine, personal choice and the greater good. While the critics of Big Pharma have plenty of good points, recent studies of Big Herba—which is unregulated in the U.S.—have debunked an array of flaws that can be deadly. Glossing over the vitriol, at the crux of the matter lies a very reasonable question: When it comes to health, who should you trust?

“Trust to your doctor” sounds simple enough until we consider the many instances throughout history when medical professionals have abused this trust, particularly in regard to minorities. Health organizations around the world classified gay people as mentally ill as late as 2001. A panelist on Larry Wilmore’s The Nightly Show last month cited the Tuskegee syphilis experiment, which treated African-American men like lab rates from 1932 to 1972, as the basis for his overarching distrust of government health organizations. Investigations recently revealed that the U.S. Public Health Service committed similar crimes against mental patients and inmates in Guatemala in the 1940s. The polio vaccine, which has saved millions of lives globally, was first tested on physically and mentally disabled children living in asylums and orphanages. Researchers advocated the forced sterilization of trans people and ethnic minorities as recently as 2012. And of course there were the Nazis and the many, many scientists before them who passionately promoted eugenics. ITV recently rebroadcast a documentary hosted by Warwick Davis detailing Dr. Mengele’s horrific experiments on dwarfs at Auschwitz.

In other words, minorities don’t have to dig too deep to come up with plenty of reasons to be wary of scientists and doctors. Regulation, transparency and a never-ending, highly public debate on bio-ethics and human rights are necessary to prevent such crimes from happening again.

But an ideological opposition to all doctors based on such abuses ignores the myriad successes. A Slate article appearing last fall, “Why Are You Not Dead Yet?” catalogs the thousands of reasons so many of us are living so much longer than our ancestors did—from appendectomies to EpiPens to everyday medications—which we so often overlook because we have come to take the enormous medical advances of the past 200 years for granted.

And yet, as so many scientists are only too ready to admit, science does not know everything. Almost no medical procedure can be guaranteed to be risk-free, and many people base their distrust of doctors on this fact. My current post-surgical complications were just cited to me by an acquaintance as reason enough for why I never should have had the operation at all and instead gone to a TCM healer.  

In my 33 years I have undergone 14 surgeries, physical therapy, hydrotherapy, occupational therapy, electro-muscular stimulation therapy, and the list of medications I’ve taken undoubtedly exceeds a hundred. I have also been treated with reiki, shiatsu, osteopathy, acupuncture, massage, prayer, and herbal remedies based on macrobiotic, homeopathic and detox theories. Some of these treatments I chose as an adult, and some of them were chosen for me by adults when I was a child and a teen. Some of the medical treatments worked, some didn’t, and some caused new problems. Some of the alternative treatments rid me of lingering pain, and some were a complete waste of time, money and energy as my condition worsened. I won’t ever advocate any specific treatment on this blog because my readership is undoubtedly diverse and the risk of making inaccurate generalizations is too great.

Indeed, a grave problem in the public debate on health is the frequent failure to acknowledge human diversity. Most health advice found online, in the media, at the gym or a healing center is geared not at minorities but physiotypical people, who are seeking the best way to lower their risk for heart disease, fit into their old jeans, to train for a marathon, or to simply feel better. They are not seeking the best way to be able to walk to the corner or have enough strength to shop for more than half an hour. Those in the health industry who endorse one-size-fits-all solutions—“We just need to jog/Start tai-chi/Eat beans, and all our troubles will go away!”—rarely address minority cases that prove to be the exception to their rule. But atypical bodies have just as much to teach us about our health as typical bodies, and leaving them out of the conversation benefits no one but those seeking to profit off easy answers.

When it comes to seeking treatment for my condition, I follow a simple rubric: I don’t want to be the smartest person in the room. I have no professional training in medicine or anatomy. As this physician explains so well, self-diagnosis is a very dangerous game. Yet I sometimes am the expert on my body thanks to the relative scarcity of people with achondroplasia—there are only 250,000 of us on earth, or 0.00004% of the world population—compounded with the scarcity of people with achondroplasia who have undergone limb-lengthening and sustained bilateral injuries to the anterior tibialis tendons. A visit to a healing center or a hospital often entails conversations like these:

Shiatsu Healer: You’re walking with a sway-back. Your wood energy is obviously misaligned because you are stressed.

Me: My hips sway when I walk because the ball-and-socket joint in the hip is shaped instead like an egg-and-socket in people with achondroplasia.

***

Physical Therapist: Your hips sway when you walk because one leg is obviously longer than the other.

Me: No, I have my orthopedist’s report documenting that my legs are precisely the same length. My hips sway when I walk because the ball-and-socket joint in the hip is shaped instead like an egg-and-socket in people with achondroplasia.

 ***

Nurse: Your temperature is pretty high. I’m a bit worried.

Me: These anesthesiology guidelines I got from the Federal Association for Short-Statured People say that hyperthermia is to be expected post-op in patients with achondroplasia.

Sometimes the information I offer goes unheeded. In both the U.S. and in Germany, I have found arrogance is equally common among doctors and healers. Some of them are delightfully approachable, and others are so socially off-putting that they make you want to throw your wheelchair at them. The same arrogance, however, can take different forms. I have documented before the particular brand of pomposity so endemic to doctors, and it is safe to say that holistic healers are less likely to treat their patients like products on an assembly line because, by definition, they are more likely to take psychological well-being into account. But they are also more likely to endorse a one-size-fits-all solution for health, which invariably marginalizes minorities like me.

Those of us with extremely rare conditions are far more likely to find specialists among those licensed in medicine than among alternative healers. Living Naturally, the only website on alternative treatments I could find that even mentions achondroplasia, emphasizes that none of the therapies they suggest for achondroplasia have ever been tested on patients who have it. To be fair, rare conditions by definition are not well-known to your average GP either. But physicians more often know how to work with the facts, embracing the medical literature on achondroplasia I hand to them. Some alternative healers also embrace such literature, while others dismiss anything written by anyone in a white coat.

Even when a visceral hatred of hospitals and their hosts is irrational, it is understandable. My most recent stay involved some of the kindest medical professionals I have ever encountered but nevertheless left me waiting for two and a half hours on a metal bench with no back support in a hallway glaring with fluorescent lights and echoing with the cries of patients in pain. I respect everyone’s right to opt against surgery, or any medical treatment, as long as their condition does not cause others harm. But no matter how much modern medicine has abused minorities’ trust, disabled people are the only minority that cannot afford to forgo it.

A worldwide study presented to Little People of America found that, at this point in history, dwarfs have a higher quality of life—i.e., access to effective health care, employment opportunities, acceptance in society—in Northern Europe than anywhere else on earth. Reductive arguments that demonize all of Western medicine because the Nazis! can be canceled out by reductive arguments that dismiss anything developed outside the West because Asia’s terrible disabled rights record!  

Broad generalizations like “Natural is better” can only be upheld by those ensconced in the privileges of a non-disabled body. In 2011, the parenting website Offbeat Families banned the term “natural birth”—urging writers to instead refer to “medicated” and “unmedicated” birth—because “natural” had so often been used to imply “healthier.” An unmedicated birth is wonderful for anyone who can and wants to experience it, but it is important to remember that it is a privilege. A privilege, like a disability, is neither your fault nor your achievement.      

“Healthy” is a relative idea. Our choices about our bodies will always be limited. This is a sometimes terrifying fact to face. But in the public debate, we must remember that it is a fact those among us with rare disabilities and conditions can never avoid. In failing to remember it, we fail to make decisions about human health that are truly informed.

 


Political Correctness Makes You More Creative

21 Dec

Europe According to Germany(“Europe According to Germany” by Yanko Tsvetkov used under CC 2.0 via)

 

Study On Avoiding Stereotypes Smashes Stereotype About Avoiding Stereotypes. Sounds like an Onion headline. The recent study at UC Berkeley reveals that encouraging workers to be politically correct—that is, to challenge and think beyond stereotypes—results in their producing more original and creative ideas. As Olga Kazhan points out at The Atlantic, this flies in the face of conventional wisdom, which asserts that political correctness stifles the truth for the sake of acquiescing to the hypersensitive. Yet the study shows that truth and knowledge are obscured when facts are simplified into stereotypes.

Take, for example, the belief widely held in the West that women talk more than men do. Unpacking this stereotype unleashes several revelations about modern Western culture. All in all, women do not use more words than men on average. Women do talk more than men in certain small groups, but men talk more than women at large social gatherings. Listeners, however, tend to become more easily annoyed by women talking in such settings, so they notice it more. Baby girls in the West do start talking earlier than baby boys do, leading pop culture to promulgate the idea that female loquaciousness must be inborn. Yet more than one study have found that girls’ advantage may very well be because mothers talk more to their infant daughters than to their sons. And what about the stereotype that women remember emotional experiences better than men do? There appears to be evidence for this, rooted in the fact that American adults tend to ask girls more questions about their feelings during their developmental years, while encouraging boys to instead focus on their actions and achievements.

So while the genders may behave differently in some respects, further scrutiny shows that we certainly treat the genders differently. Political correctness demands we alter this. And then see what happens.

But instead of being seen as a great generator of progress and innovation, political correctness is more often perceived as a silencing technique, if Google’s image search is any indication. There is some valid cause for this concern. One of the worst tactics taken up by some minority rights activists is the phrase You can’t say that. It often stems from the noble idea that no one should have to endure threats, harassment and direct insults in everyday life. But simply banning bad words can lead to the destructive assumption that simply using the right words makes everything okay.

After all, avoiding stereotypes is not about shutting up but embracing depth and nuance. Professor Mihaly Csikszentmihalyi researches happiness and creativity, and in his latest book, he finds that one of the best tools for innovation is not limiting our own selves to gender stereotypes:

Psychological androgyny… refer[s] to a person’s ability to be at the same time aggressive and nurturant, sensitive and rigid, dominant and submissive, regardless of gender. A psychologically androgynous person in effect doubles his or her repertoire of responses and can interact with the world in terms of a much richer and varied spectrum of opportunities. It is not surprising that creative individuals are more likely to have not only the strengths of their own gender but those of the other one, too.

While the studies cited here focus on gender stereotypes, it’s easy to see how political correctness can foster productivity when applied to all sorts of minorities. For example, one way to react to  urgings to avoid antiquated terms like “Bushmen” and “Hottentots” is to ask why. This will reveal that “Hottentot” was a name assigned by Dutch and German colonists meant to caricature the sound of the Khoekhoe language, and that “Bushmen” was a derogatory name for the San first assigned to them by the Khoekhoe. This uncovers the fact that the San have been the most exploited people of southwestern Africa, primarily because their society has no system of ownership. They have been stereotyped as primitive and therefore less intelligent, but like so many non-state societies surviving into the present day, they have done so by developing skills that help them live in isolation – i.e., in unforgiving environments where other peoples have perished.

Or you can react to the urging to avoid “Hottentots” and “Bushmen” by simply saying, “I’ll call them whatever I want to call them!”  As the saying goes, stereotypes are there to save us the trouble of learning.

 

 

White Woman Sues Spermbank for Accidentally Giving Her Black Donor’s Sperm

5 Oct

Unity in Diversity(Image by Fady Habib used under CC 2.0 via)

 

Man, we can’t go two months without some couple making headlines over a baby they didn’t plan for. An Ohio woman named Jennifer Cramblett is suing a spermbank for impregnating her with the contents of a vial different from the one she selected. The mix-up resulted when a clerk misread Vial 330 as “380.” Her lawsuit reads:

On August 21, 2012, Jennifer gave birth to Payton, a beautiful, obviously mixed race, baby girl. Jennifer bonded with Payton easily, and she and [her partner] Amanda love her very much. Even so, Jennifer lives each day with fears, anxieties and uncertainty about her future and Payton’s future. Jennifer admits that she was raised around stereotypical attitudes about people other than those in her all-white environment. Family members, one uncle in particular, speaks openly and derisively about persons of color. She did not know African Americans until her college days at the University of Akron.

Because of this background and upbringing, Jennifer acknowledges her limited cultural competency relative to African Americans, and steep learning curve, particularly in small, homogeneous, Uniontown, which she regards as too racially intolerant.

As just one example, getting a young daughter’s hair cut is not particularly stressful for most mothers, but to Jennifer it is not a routine matter, because Payton has hair typical of an African American girl. To get a decent cut, Jennifer must travel to a black neighborhood, far from where she lives, where she is obviously different in appearance, and not overtly welcome.

One of Jennifer’s biggest fears is the life experiences Payton will undergo, not only in her all-white community, but in her all-white, and often unconsciously insensitive, family. Despite her family’s attempts to accept her homosexuality, they have not been capable of truly embracing Jennifer for who she is. They do not converse with her about her gender preference, and encourage her not to “look different,” signaling their disapproval of her lesbianism.

Though compelled to repress her individuality amongst family members, Payton’s differences are irrepressible, and Jennifer does not want Payton to feel stigmatized or unrecognized due simply to the circumstances of her birth. Jennifer’s stress and anxiety intensify when she envisions Payton entering an all-white school. Ironically, Jennifer and Amanda moved to Uniontown from racially diverse Akron, because the schools were better and to be closer to family. Jennifer is well aware of the child psychology research and literature correlating intolerance and racism with reduced academic and psychological well-being of biracial children.

Family planning is so endlessly complicated that any law-abiding individual seeking privacy deserves it. But Cramblett is going public with her pursuit of compensation for emotional distress and therein invites judgment. John Culhane writes at Slate that this sort of blunder is bound to happen in the free market of assisted reproductive technology. Julie Bindel at The Guardian warns of a creeping let’s-get-a-designer-baby approach to parenting among those using IVF. “Just remember,” she writes. “If the child you end up with does not exactly fit your ideal requirements, you can’t give it back – and nor should you even suggest that something bad has happened to you.”

Do parents have the right to be guaranteed certain kinds of children? Those pursuing parenthood via sperm donors, egg donors, or adoption have much more freedom to decide against certain kinds of children than those using nothing but their own biology. The application for becoming an egg donor in New York contains over one hundred invasive questions about family and medical history, as well as education, favorite sports, artistic talents and “additional characteristics” such as “cleft chin, full lips, big eyes, or high cheekbones.” Applicants are required to submit three photos “that shows [sic] your face and/or body type clearly.”

I understand why such questions are asked. Many if not most parents already know such things about those involved in producing their child, so why shouldn’t the IVF parents be allowed to know? If my partner and I were to join their ranks, what sort of donor profile would seem most appealing to us? Deciding upon something inherently entails deciding against something else. Nevertheless, it is hard not to see this tick-the-box approach to baby-making as eugenic. How many parents would accept my eggs, with their 50% chance of passing on achondroplasia? How many would sue if someone accidentally got them without asking for them?

Parents seeking to adopt children here in Germany are asked what kind of children they would and would not like to have before they look at profiles. For example, do you mind if your children look extremely different from you? What about physical disabilities? Mental disabilities? Drug addiction? In an interview with a family whose two children were adopted, I was told that the agencies encourage prospective parents to be utterly frank about their fears and prejudices – that an insistence along the lines of, “We can handle anything!” will sound suspiciously naïve.

Such brutal honesty strikes me as reassuringly well-informed, perhaps the result of infamously ideological parents like Josephine Baker or Jim Jones, who flaunted their rainbow families at the expense of the children’s individuality. Reading Cramblett’s descriptions of her relatives’ hurtful reactions to her sexuality, I can sympathize with the feeling that battling one kind of bigotry can be hard enough. Everyone deserves to live free from the unnecessary pain of bigotry. But if we’re going to be suing someone, wouldn’t it be more logical to file complaints against those who make her daughter feel stigmatized and unrecognized? Surely they’re the ones causing “emotional distress.”

While the spermbank does appear to have erred out of negligence and may be at fault, would awarding Cramblett for “emotional distress” not set a precedent and open the door for endless lawsuits over the births of minority children parents did not explicitly wish for? My parents had a 1 in 40,000 chance of producing a child with achondroplasia, as does anyone reading this. (That is, unless you already have achondroplasia.) Should doctors warn every prospective parent of those odds? Should they warn us of the chance for racial atavism? If homosexuality proves to be genetically determined, will parents have a right to sue doctors who fail to remind them of the risk? The very idea of being financially “compensated” for emotional distress is often silly to those of us who know from firsthand experience how vastly unreliable life can be.

Legal decisions aside, my primary hope is that Cramblett and her partner will explain the lawsuit to her daughter in a way that does not cause her to feel any more conflicted about her extraordinary appearance than her relatives’ racist views already do.

 

 

Would You Rather Be Born Disabled or Become Disabled? (Part Two)

28 Sep

Dead body(Image by Stéphane Lavoie used under CC 2.0 via)

 

Most of them were not born with dwarfism. This is what I observed from a history of eminent dwarfs who enjoyed some degree of success outside of freak shows before the minority rights movements of the late 20th century. Most of them, such as Toulouse-Lautrec, experienced stunted growth as the result of an accident or an illness well after birth. Well after it would have been socially acceptable for their parents to give them up or hide them away. Such cases account for a very small minority of people with dwarfism, yet they dominated the scene of non-marginalized dwarfs for most of Western history. This got me thinking.

I conducted a crowd-sourcing experiment on Facebook, asking friends to name very famous people with severe physical disabilities. They had to be household names, nothing along the lines of “that little guy on Game of Thrones” or “that comic on that show from the Eighties who had a muscle problem.” The list of responses bore no surprises: Helen Keller, FDR, Beethoven, Frida Kahlo, Ray Charles, Christopher Reeve, Stephen Hawking, Michael J. Fox. All but two of them—Stevie Wonder and Oscar Pistorius—incurred their disability after infancy. Was this another sign of congenitally disabled people being hidden away? The vast majority (85%) of disabled people become disabled after birth. But the 15% whose conditions are congenital appear to be underrepresented in public.

Does society more readily accommodate those who lose certain abilities than those who never had them to begin with? Anthropologists know that for most of human history any injury or illness without a visible cause was presumed to be the result of black magic or a vengeful deity. From the European mythology of the changeling right up to the Nazi condemnation of genetic “monsters,” congenitally disabled people have been traditionally viewed as non-human and segregated accordingly. Vestiges of this remain in our general tendency to simply not consider congenitally disabled people as potential friends or partners or even peers, in contrast to the conviction that we should stick by our loved ones no matter what befalls them. Pop icon Dick Clark was warmly welcomed back to television as a co-host after his debilitating stroke, but I’ve yet to find a TV presenter in America who was born with a speech impairment like the one Clark developed. I don’t have the funding to empirically test my hypothesis, but you don’t have to delve too far into mainstream media to come up with stories, articles and interviews spotlighting someone who seemed to have it all until one fateful day when tragedy struck. And notice the comparable paucity of such resources on people who have always lived that way.

I squirm as I write this for fear of implying that those who become disabled have an easy time of it. Far from it. It would be utterly callous to ignore the often indescribable strain illness and injury can inflict on relationships, and the horrific social isolation that too many patients face. There’s a reason that “fair-weather friend” is a well-known term. And the human fascination with suffering can be more voyeuristic than empathic.

But no matter the motive, it is always accompanied by the unspoken understanding that no one would ever want to become disabled. This is, in essence, the most universal view of disability: Who on earth would want to lose an ability of any kind?

Even as a congenitally disabled person I understand this. I would never choose to erase my dwarfism from my life experience. But I do not like becoming more disabled than I already am. After tendon injuries and surgery to combat stenosis, I miss being able to ride a bike, to walk barefoot, to cook and type and sit on benches for long periods without pain. And if tomorrow I were to lose my ability to hear, see, or walk, I would be distraught, to put it mildly.

But in voicing this, it is crucial for me—and everyone listening to me—to recognize that my becoming deaf would be a profoundly different experience from that of my friend who has been Deaf since he can remember. Many Deaf people with cochlear implants have told of how overwhelmingly unpleasant hearing sound for the first time can be: One man has “discovered that, far from being adorable, the voices of his grandchildren were rather shrill and often best experienced with the implant turned off.” That Deaf Guy comic strip tells of the authors’ son pitying people who don’t know how to sign.

Similarly, those who have always needed a wheelchair to get around tend to see it as no worse than needing shoes to get around. Yes, it’s inconvenient in a world where ramps are all too rare, just as it would be inconvenient for those of us who are ambulatory if most public facilities didn’t accommodate the shoes on our feet. But that difficulty is imposed by a society that fails to accommodate certain minorities, not by the disability itself. Congenitally disabled bodies do not notice what they lack. As so many have said before me, How can you miss something you never had to begin with?

Researching all of this has brought me to the following conclusion: As individual humans, it is harder for us to deal with becoming disabled than with being born disabled. But as a society, the reverse is true – it is harder for us to accept someone who is born disabled than someone who has become disabled.

As a result, those who were born disabled and those who have become disabled often find themselves on opposite ends of the argument. A woman like Stella Young, who has never been able to walk, is rightly insulted when people tell her she is brave and inspiring just for getting up every morning. (Her TED Talk below is worth every minute.) But a woman like Christine Miserandino, who is slowly losing the ability to walk, is rightly seeking others’ encouragement and support as she struggles to do something she once took for granted. (Her oh-so-quotable Spoon Theory has already been linked on this blog before.)

 

 

Because the majority of disabled people are like Miserandino, not Young, the discourse on disability is dominated by sympathy, fear and lamentation. It is hard for us to remember that we shouldn’t pity a woman with cerebral palsy for her spasticity when so many people with multiple sclerosis openly mourn their loss of agility. Those who become injured or ill are entitled to their grief and no one should ever attempt to silence them. But everyone should think beyond their own experience before they publicly decry their condition as unbearable. Especially when it ends up joining the chorus of ableism led by non-disabled people.

One of the most read articles at The Atlantic this month is a piece by bioethicist Ezekiel Emanuel who explains why he hopes to die before age 76:

[Living too long] renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.

Emanuel is an amateur mountain-climber and a professional writer. He is entitled to feel upset at the idea of losing the abilities he currently holds most dear. And his other arguments about the drawbacks to longevity are as thought-provoking as physicians’ personal opinions on life-saving interventions. But his decision to openly denounce dependence and weakness as unproductive and undignified increases the lifespan of our culture’s ableism. How can we ever stop marginalizing disabled people if we continue to openly voice our fear of becoming like them?

The experiences of those who are born disabled and the experiences of those who become disabled are profoundly different and equally valid. Simply remembering that would change a lot.

 

 

Would You Give Up A Disabled Baby, And If So, Why?

10 Aug

Youri(Image by Naoya Fujii used under CC 2.0 via)

 

Tonight 60 Minutes will feature the very first interview with the Australian couple that has attracted international scorn ever since the Thai woman they hired to be their surrogate mother publicly accused them of adopting one of the twins she gave birth to while refusing Baby Gammy, the one with Down Syndrome. Hiring a surrogate mother who lives abroad is both legal and unregulated in Australia, with none of the criminal background checks or counseling that are required for domestic surrogacy arrangements.

The Digital Age has seen the rise of prospective parents independently seeking out surrogate mothers online without any oversight, as well as a rise in “re-homing,” wherein adoptive parents join Facebook or Yahoo groups to seek out new parents for a child they’ve decided is harder to handle than they had thought. A disturbing Reuters report last fall profiled a couple who handed over a girl with medical problems they had adopted from Liberia to a new family they had found online, only to later discover that the new parents were known sex offenders.

Yet while black market adoption may be on the rise thanks to the Internet, the history of people rejecting only certain kinds of children is depressingly long. Only 2% of all babies born are disabled, yet half of the children up for adoption in the United States are disabled. Half of them are also black. Chad Goller-Sojourner told NPR this year that prior to his adoption by a white family, he was passed over by more than one black couple for being “too dark.”

I am deeply grateful that my parents did not put me up for adoption, like so many parents of dwarfs before them. Being rejected by your own parents simply for your body feels like a rejection of your very life. But I will not start chanting that parents should never ever make adoption plans for their children until we admit that not everyone is capable of being the sort of parent certain children need. The skills required for accepting your child’s skin color or body shape are not the same skills required for accepting a lifetime of waiver agreements about the deadly risks of invasive surgery. In the real world, some marriages do break down and some parents do become abusive and some parents do murder their half-grown children when they try and fail to cope with their child’s disability. I know a good number of people who are great at working independently but terrible at caregiving. In Far From the Tree, Andrew Solomon profiles a British woman who eventually relinquished custody of her severely disabled daughter to a foster mother, telling the NHS, “I’m not the right mother for this child.” Such honest humility requires some degree of bravery and, as Solomon points out, honors the skills of the foster mother and all parents who keep their commitments to disabled children.

Do some parents give up too easily? Absolutely. But are some children better off far away from their parents? Evidently. Because no two parents are alike, what is best for the child is best decided on a case-by-case basis. The Australian case sounds dreadful, but I’m withholding judgment until the parents have had their say. And as long as there is reproduction, there will always be parents who put their children up for adoption or terminate pregnancies, and society must thus ensure that the means for doing so are absolutely safe and heavily regulated.

But we cannot deny that too many parents end up failing to support certain kinds of children because the society they live in fails to support such kinds of people. Parents can usually see through the B.S. of those who urge them to stand by their kids no matter what and who also regularly make disparaging remarks about scars, fat, or dark skin, and openly wince at the idea of looking like a freak, a wimp, or a pussy. We won’t ever lower the disturbing number of prospective parents who would reject a child with an extra finger or toe until we as a society confront what would cause a parent to think that having an extra finger or toe is too horrific to endure.

During a discussion in college about the individual’s right to make their own medical decisions, I was shocked to hear a bunch of my friends insist that they would rather die than lose the ability to walk. Is it possible to attach such extreme shame to a hypothetical situation for yourself without attaching shame to the situation of others who live that way every day?

When I told one of my fiftysomething mentors about how upset I was by the incident, she smiled and said, “Well, that’s something young people are certainly more likely to say than anyone else.”

A fortysomething friend piped up, “Yeah, that is a very young person thing to say. I swore when I was young that I’d shoot myself if I ever went bald and yet here we are!”

Indeed, while the strains of physical pain and special accommodations and repeated doctor’s appointments are very real, perfection is not. And no matter how far technology advances, the belief that we can guarantee ourselves “normal” children is delusional. After all, unlike Baby Gammy and I, 85% of all disabled people were not born disabled. That’s something to bear in mind when heading to the obstetrician’s or the adoption agency.  

 

 

CPS: The Sticky Business of Not Minding Your Own Business

20 Jul

(Via)

 

A South Carolina woman was arrested earlier this month for allegedly letting her 9 year-old daughter play alone in the park while she went to work at McDonald’s. The mother had given her daughter a cell phone for safety’s sake, but a concerned stranger’s call to Child Protective Services led to the mother’s incarceration and loss of custody. Bloggers on both sides of the political spectrum are outraged over what they are calling a case of helicopter parenting gone mad. On Twitter, stories of “When I was a kid…” abound.

I wholeheartedly share their shock and dismay. (Seriously, couldn’t CPS have merely talked to the mother and helped her find a friend or a caregiver whose home could be a base for the girl during mom’s eight-hour shift?) But I am concerned about the mounting vitriol aimed at those whose job it is to protect the child. I grew up among social workers. And these bloggers, while rightfully critical, are failing to acknowledge that the mind-your-own-damn-business mentality they advocate is exactly what prevails in societies where everyone looks the other way when a child is neglected or abused.

Of course there are terrible social workers out there, just as there are those to be found in any profession who should really be working elsewhere. More importantly, it is dangerous to pretend that institutionalized xenophobia does not exist. A 2012 report revealed ableism appears to be a tremendous problem at CPS, with many disabled parents living in fear of being declared incompetent by social workers with a poor understanding of their abilities. In the South Carolina case, it seems reasonable to postulate that two of the American South’s most infamous cultural institutions—classism and authoritarianism—are what led to a cruel and unusual punishment doled out for what was, at best, a misdemeanor by a working mother.

But while attention to this case is warranted, news outlets tell real-life tales of wrongly accused parents to such an extent that one would assume most actions by CPS are unjustified. The media bias tends toward parents because parents are legally allowed to talk publicly about their children. Were a social worker to attempt to tell his side of story, he would be breaking the law. And children and families grateful to CPS for repairing broken homes rarely head to their local news station to rehash their past personal struggles.

We must acknowledge and condemn every instance of misconduct by social workers, just as we must acknowledge and condemn every case of medical malpractice, and of police brutality. But unlike doctors or police officers, social workers do not enjoy a wealth of Hollywood blockbusters and TV shows glamorizing what they do. Most portrayals in film and on television are fiercely unflattering: from the soulless bureaucrat too obsessed with rules to know love when she sees it, to the more sinister instrument of a government conspiracy to threaten political dissidents by taking away what they hold most dear. These stereotypes invariably evoke sympathy for the devastated parents and children, who wish those heartless busy-bodies would just learn to stay out of other people’s business. Rarely are social workers featured fighting the good fight.

And yet, that’s what they are there to do. Not to get a thrill from ripping crying kids away from their distraught parents, but to listen to every member of the family until they understand the source and extent of the problem. While pop culture promotes individual therapy as a path to wellness on par with yoga or meditation, the idea of family therapy tends to be seen as an outrageous invasion of privacy imposed by some glaring ice queen who is just waiting for the parents to slip up. Yet adept social workers know that the parents of neglected children sometimes have significant learning disabilities or were the victims of abuse themselves. When funding allows, parenting courses are available for those who have a hard time remembering how often diapers need to be changed, or that there are often alternatives to screaming and spanking. Adept social workers also know that neglected children are often overly forgiving of an abusive loved one, just as victims of domestic violence often are. And adept social workers know that children are far more likely to be abused, molested, or kidnapped by a member of their family than by a stranger. As with women, the most dangerous place for a child is their own home.

When I was an 11 year-old on Long Island, there was a report that a girl my age named Katie Beers had been kidnapped from a local arcade where I’d attended birthday parties. The perpetrator turned out to be a friend of the family, who kept her locked in his basement for 17 days. When he broke down and confessed to police, Beers was not returned to her mother, but placed in a foster home. I clearly remember the mother’s tearful face plastered across the headlines: “I just got her back and now they’re taking her away from me!” CPS investigators had discovered that, prior to the kidnapping, Beers’s mother had left her for years in the care of her godparents, where she was treated “like a slave” and repeatedly raped by her godfather. Beers writes today that she was ultimately relieved to be placed in foster care and that, had she not been taken out of her home, she never would have graduated high school, let alone college.

When it comes to the legal rights of the child versus the rights of the parent, the court of public opinion will always be fueled by vitriol. Family court, of course, should transcend this, putting reason and research first and foremost. CPS is undoubtedly rife with problems, many due to its miserable lack of funding. But we as a society will never put forth a sincere effort to endow social workers with enough funding to do their job well until we truly value what they do in the first place.

 

* Please note that while my sympathy for the social worker’s perspective is inspired by what I’ve learned from those I know, the views and conclusions expressed here are mine and mine alone.

 

 

Segregation Loses In German Court

25 May

Untitled(Image by Angela Schlafmütze used under CC 2.0 via)

 

People must learn to accept their disabled neighbors, a Rhineland court ruled this week in a case that—thankfully—has attracted controversy. A woman in the town of Kaltenengers, near Koblenz, filed suit against the construction of a home for severely disabled citizens near her apartment block. According to the Rhein-Zeitung, the woman and several other residents had expressed outrage at the supposed imposition upon their community, while their court arguments sparked outrage among the public. The plaintiff claimed that, “The vocalizations and noises made by the disabled will injure our own psychological well-being.” Talk about not-in-my-backyard.

All of us have sympathy for the NIMBY mindset to some extent. I’m fine with my neighbors playing music as long as it’s the right kind of music. (ZZ Top, yes. Opera, no. I can attest that nothing pierces through paper-thin walls at 2 am like a soprano aria.) When it’s the night before the most important exam in your academic career, you want everyone within a five-mile radius of you to shut up. When it’s the night after you’ve passed that exam with flying colors, you wish those prissy neighbors interrupting the celebrations to tell you to pipe down would let go and live a little. Such moments serve as reminders that Everybody matters is easier said than done.

There will always be debates about pristine parks, where the grass is there to be looked at, versus people’s parks, where the grass has been picnicked to the brink of death. (Berlin votes today on that very issue in deciding the fate of Tempelhof Park and, for many, the definition of Berlin itself.) But NIMBY descends into a segregationist mentality the moment we reject the idea of certain types of people outright. And in this court case, pitting disabled residents against their huffy neighbors, it makes you wonder who is really the most challenged in becoming a well-adjusted member of society.

 

 

The Real Reason You Should Learn A Foreign Language

27 Apr

Language Scramble (Image by Eric Andresen used under Creative Commons license via)

 

“Emily Sanford speaking, how may I help you?”

“Yeah, hi, I just got put through to you by one of your coworkers, and that guy can barely speak a damn word of German! Why do you hire foreigners? Because they’re so cheap?”

“I’d be happy to help you if you could tell me why you are calling, sir.”

“I need to ask about where to distribute some flyers your company mailed me, but I really want to know first why on earth you hire foreigners? I mean, seriously? Is it to save money?”

I pressed him for the details about the flyers, suppressing the urge to blurt out something in German to the effect of, “I American. I no understanded what you say me in Deutschy language.”

Contempt for immigrants who can’t speak the local language at the C1 Level or higher seems to pervade every country. I’ve witnessed an initiative to make English the official language of my parents’ tiny village in Upstate New York after some white farmers heard two words of Spanish on the street, and I’ve been yelled at here in Germany by surly locals for speaking English in public. These complaints are usually steeped in the explicit or implicit stance that if you can’t speak the language, you shouldn’t be here.

Yet speaking a second language is unlike any other skill. Plenty of fiercely intelligent people are terrible at foreign languages and, unlike being terrible at arithmetic or project management, this weakness will render any of their other talents virtually invisible if the job market does not operate in their mother tongue. Speaking the local language flawlessly and eloquently is the best bet to integration in any society. And if it doesn’t happen to be a language you grew up speaking, it’s a lot of work.

I speak German, French, Russian, Spanish, Swedish, and Dutch, but “speak” is a relative term. I can hold basic conversations in Russian and Spanish, but they’re always peppered with errors. (Im probably the American equivalent of the intelligible but amusing foreigner who says things like, I vant you to come sit on de table.) A few years of self-teaching have led me to understand almost anything written in Dutch, but I can’t understand the nightly news and I can’t say anything not in the present tense. My in-laws in Stockholm sweetly praise whatever I dare to say in their language, but I miss most of the details of whatever they say among themselves. After starting a book called Swedish In Three Months seven years ago, I’m still on chapter four.

I’m fluent in German and French, but “fluent” is too simplistic a word for the complexity of what it denotes. My German feels about as good as my English was back when I was in middle school. That is, I can say almost anything I want to say, but I sound a lot less diplomatic and nuanced than I would like to. I still learn new words every day. (Added to my vocabulary this week were “chisel,” “epic,” and “sexual exploitation.”) Explaining an intricate issue like a budget report to a superior at work can still make me falter. I occasionally hear myself using the wrong gender or preposition, an instant giveaway that I’m foreign.  And because double-digit numbers in German are said in reverse order (e.g. “twoandthirty” instead of “thirty-two”), I hate taking down numbers. Always have and always will.

This is why it would be deceptive of me to simply say, “I speak seven languages.” To Brits and Americans, it sounds like bragging, and to Europeans, it sounds suspicious. After all, it’s an unspoken but well-known fact that Brits and Americans who fancy themselves cosmopolitan love to exaggerate whatever knowledge of a foreign language they have, especially when they’re in the company of those who can’t possible test them on it. As British-Canadian satirist Christian Lander writes at Stuff White People Like:

… two years of college Italian does not confer fluency.  For the most part, these classes will only teach a white person how to order food in a restaurant, ask for a train schedule, and over pronounce words when they are mixed into English. Amazingly this small amount of proficiency is more than enough to warrant inclusion on a resume under “spoken languages.”

… When you hear a white person say that they speak your native language, you will probably think it’s a good idea to start talking to them in said language.  WRONG! Instead you should say something like “you speak (insert language)?” to which they will reply “a little” in your native tongue.  If you just leave it here, the white person will feel fantastic for the rest of the day.  If you push it any further and speak quickly, the white person will just look at you with a blank stare.  Within a minute you will notice that blank stare has shifted from confusion to contempt.  You have shamed them and your chance for friendship is ruined forever.

Finally, though they won’t admit it, white people do not believe that learning English is difficult. This is because if it were true, then that would mean that their housekeeper, gardener, mother-in-law … are smarter than them.  Needless to say, this realization would destroy their entire universe.

Indeed, my linguistic repertoire doesn’t sound at all impressive to the 216 million people around the world who speak four languages or more. Most of these people live in Africa and, unlike me, their range always encompasses completely unrelated languages like French and Bangangte, or English and Wolof. 45% of my Facebook friends speak two or more languages well enough to say or describe whatever they want to say. For them, and half of the people on earth, speaking more than one language is like knowing how to drive or swim. Sure it requires dedication and practice, but it’s not something you flaunt once you learn how to do it. You just do it.

Conventional wisdom says it’s best to be complimented on your language skills by a native speaker.  But if that native speaker is monolingual, they will only notice what you can’t do.  It takes a polyglot to appreciate how far along you are because they know just how much work goes into what you’re trying to accomplish. Anyone who’s lived 24 hours a day in another language knows about the headaches, the falling into bed exhausted at 8 pm, the horrors of meeting someone who talks fast.

Tech reviews across the Interwebs have been abuzz this year about a new language program called DuoLingo. The online program claims to be revolutionizing the way Anglophones learn other languages via the addictive nature of video games. That DuoLingo inspires passion and dedication is wonderful, and after checking out the advanced German program, I’m impressed with how authentically modern the dialogue is. (None of that old school drivel still found in too many online programs: “I am charmed to make your acquaintance. Which way to the discotheque?”) But I’m skeptical of the company’s insistence that you can learn a language without ever speaking to people.

Does the game teach you how to develop an intelligible accent? Does it teach you how to dive into a dinner conversation with sentences shooting at you from every direction? And, perhaps most importantly, does the game warn you about the crucial cultural connotations of certain words? To cite just a few examples, in German a “Pamphlet” isn’t just a pamphlet, it’s a manifesto. The word “deportieren” means what it sounds like except it’s only used to describe someone being sent away to a concentration camp. And you will come off as crass if you ever call a German woman “Fräulein.” As with all my knowledge of German slang, I learned these lessons from German people, not dictionaries. Language is culture and there are no cultures without people.

And just like every culture on earth, every language is a moving target. What sounds hip and what sounds sophisticated and what sounds rude and what sounds stuffy differs from generation to generation, from place to place, and from person to person. It’s exhausting, but it’s also pretty cool. In an increasingly homogeneous world, the most resilient differences are linguistic. American tourists are often disappointed to discover that businessmen in London dress more like Bill Gates than Winston Churchill, or that women in Barcelona don’t walk around with roses clenched between their teeth. But no matter the visual monotony, their ears are guaranteed to be confronted with new music.

Yet, despite its shortcomings, I suspect that DuoLingo’s personless approach to foreign language learning is exactly what many bilingual wannabes yearn for. In my experience, the number one reason adults will avoid or give up learning a foreign language is not that they dislike grammar or are overwhelmed by accents – it’s that whenever you try to speak a new language, you are bound to be laughed at.

Unlike learning to dance or sew or build a shed, you can only master a language by repeatedly practicing in the company of experts—i.e., native speakers—who are not paid to have the patience of teachers. No matter how good you are, the moment you venture out of the classroom to talk to others, someone will smirk at you and someone will correct you and someone else will get frustrated with how long it takes you to say the simplest thing. Someone is bound to make fun of you. And adults do not like being made fun of.  

They don’t like being corrected mid-sentence or being told they sound “cute.” It reminds them of being back in school, and they’ll do anything to avoid it. This is why trying to learn a foreign language from a romantic partner often puts strain on the relationship. Sure it’s fun to proudly whisper “I love you, my sweetness” to your boyfriend in another language. But it’s exasperating to try to discuss a film you just watched together and see a smirk creep across his face as you say, “I think that part not so good, but other part a little, little okay, but it hard understand why the… the… the… what’s the word?”

Adult pride can be so sensitive that there are debates as to whether or not it’s rude to correct a grown person’s linguistic mistakes outside of the classroom. I’m of the camp that insists on gulping down our pride because, as my French hostess told me my third day in Provence, “Do you want to learn French or don’t you?!” Her commitment to this credo was proven when she shouted grammatical corrections to me from another room while I was talking on the phone.

But there are other conflicts where the rules for etiquette are not so clear. My partner and I recently told a Danish-German couple about our latest trip to Stockholm. We had had a few tiffs about my being left out of the Swedish conversations and his relatives being left out of the English conversations. 

Our friends nodded knowingly. “The answer to that problem,” the Dane said with a grin, “is that it’s incredibly rude of them to leave you out of a conversation by speaking a language that’s hard for you, and it’s also incredibly rude of you to insist that everyone switch to a language that’s hard for them just for your sake.”

Indeed, being excluded from anything is a nasty feeling and nothing excludes like a foreign language. Then again, once a couple is fluent in more than one common language, the ability to speak in code is a pretty sweet reward. (Ex: “Do you mind if we change the subject, honey? I don’t want to hear him get going on this again… ”)

Many adults insist that they would have become fluent in a foreign language if only their parents had paid for early lessons because kids pick up languages better. There is truth to this argument children living abroad for a year or more are indeed more likely to become fluent than their parents are, but few understand why. I do not believe the pop science assumption that kids have an easier time learning languages because they are neurologically predisposed. Studies at Cambridge University—and my own experience as an English teacher in Berlin pre-schools—show that kids above the age of three start off a new language with the same bad accent and tendency to make mistakes as adults do. The three advantages children do have over adults are all social.

First of all, while they don’t exactly enjoy being laughed at, kids are far less self-conscious about making mistakes than teenagers and adults are. Secondly, immigrant and expat kids can easily be immersed in the local language simply by being enrolled in school, as opposed to their parents, who must first land a job in the language and therein already demonstrate some proficiency. Thirdly, and perhaps most importantly, kids have a lot less to learn to achieve fluency in their age group than adults do. A first grader’s mastery of a language involves being able to talk about Disney films and their favorite flavor of ice cream and all that other stuff found at the intermediate level of any language course. Fluency for an adult means being able to engage in debates about the next election or to write business letters or to make witty jokes with a killer punch-line, all skills for which we each need 12 years of schooling just to master in our first language, never mind a second one.

Learning a foreign language takes a lot of patience and a sturdy ego. In return, it endows you with empathy for students of your own language. And with this empathy it is not rude to smile at a non-native speaker’s mistakes or to poke fun at languages and accents. It’s hilarious to hear someone with a thick German accent try to say “weather vane” (usually comes out as “fezzerwane”), and it’s just as hilarious to hear Americans try to say, “Geschlechtergleichberechtigung” (“gender equality”).

When I was staying in Tokyo two years ago, my friend Kazumi would call me to dinner. “Em-i-liiii!”

Hai!” I’d reply with exorbitant enthusiasm.

This always made her and her fiancé burst into giggles. “So cute how you say, ‘Hai!’ ” she would smile.

“So cute how you say my name,” I’d smile back.

This exchange would not be so innocuous if one of us were portraying the other’s accent as a sign of stupidity, or complacently refusing to ever leave our own linguistic comfort zone.

When Brits complain about the invasion of other languages and dialects, they ignore that millions throughout Asia, Africa, Oceania, the Americas and the Caribbean gave up their first language for the King’s English lest they face punishment. When Americans insist that they shouldnt have to learn another language because immigrants and foreigners should learn theirs, they ignore that more than three-quarters of us are descended from ancestors who had to learn English as a second language. Many Americans seem to believe they did it so that we wouldn’t have to. But if they want to fully comprehend what exactly their ancestors achieved and what exactly they’re asking of immigrants today, then they will have to try to do it themselves. If I had wanted to be truly fair to my caller so angry about my coworkers German, I would have switched into my own language and waited to see how well he fared. 

Learning a foreign language is not about picking up enough exotic words to be able to show off at dinner parties.  Its about understanding why foreigners make mistakes in our language by exposing ourselves to the mistakes we are bound to make in theirs.  It’s about both the guest and the host, the tourist and the immigrant, not giving anyone attitude for failing to speak flawlessly to them in their own language. Its about forging a path to greater empathy, until it expands into your own backyard and all around the world.

 

 

A Challenge for Supporters of “Traditional Marriage”

13 Apr

(Via)

 

I’m all for toning down the emotion in politics and avoiding vitriol. But sometimes a silly idea reprinted for the umpteenth time just gets to you.

In an attempt to bridge the gap between proponents of marriage equality and the opposition, columnists Will Saletan and Connor Friedsdorf have been arguing that the former shouldn’t dismiss the latter as bigoted. Not all same-sex marriage opponents are homophobic, they declare, and comparing them to interracial marriage opponents is a false equivalency because plenty of traditionalists think gay people are perfectly okay. “Opposition to gay marriage can be rooted in the insidious belief that gays are inferior,” Friedsdorf writes, “but it’s also commonly rooted in the much-less-problematic belief that marriage is a procreative institution, not one meant to join couples for love and companionship alone.”

Childfree couples will take umbrage at this, and who can blame them? If we decide that the word “marriage” should only be awarded to those ready and willing to make babies, how about raising the bar a bit higher while we’re at it? How about limiting it to couples who have known each other for at least five years, have both completed their education, and are financially independent enough to pay for their own wedding? How about requiring premarital cohabitation for a period of at least 18 months—the infatuation phase lasts 9 to 18 months, after all—and of course requiring engaged couples to have sex a bunch of times, in order to make sure they know what they’re getting into? And why not reserve marriage for those who have never been previously married, never had a brush with so much as a traffic cop, and have passed an emotional intelligence test? In any case, conservatives who dare to argue that only baby-minded couples qualify for the marriage moniker shouldn’t be one bit surprised when this unleashes a barrage of opinions about which sorts of couples truly “deserve” it.

But while we all privately hold firm opinions about the best recipe for a partnership, and we all tend to voice these opinions here and there in public, there is something particularly revolting about those earnest attempts to argue that the ideal family is founded in a man and a woman’s physical capacity to make children. Five justices already decided last year that this argument doesn’t hold up in court. But Saletan and Friedsdorf’s insistence that the argument is nevertheless “rational” and “much-less-problematic” than other forms of bigotry is solipsistic and insensitive to the point of seeming cruel.

My extended family includes foster children and adopted children. There are scores of wonderful reasons for couples to adopt: they can’t physically have kids, they don’t want to physically have kids, their medical situation is complicated, they don’t want to increase the global population, they desperately want to do something about the crisis of unwanted children in the world. They recognize the indisputable truth of which most are aware but not all of us like to acknowledge – that family is what you make of it.

Some adopted children, like the subjects of the 2011 documentary Somewhere Between, feel compelled to make contact with their birth parents or culture of origin, and that is their right. Others, like Scott Fujita and Philipp Rösler and Steve Jobs, have felt no connection whatsoever and are at best amused by others’ fixation with their origins, and that is their right. When facing the myriad complexity of what makes a person who she is, guaranteeing everyone the right to self-determination is by far the fairest solution.

Some people admirably bend over backwards to honor their family ties, no matter how hard it may be, while others wisely save themselves a lot of grief by avoiding toxic individuals who share their DNA. For outsiders to implicitly value that DNA over genuine love and unwavering devotion is a pretty brazen putdown. Those who voluntarily commit and honor their commitment to be someone’s family deserve so much more respect than all of the deadbeat and emotionally abusive parents I’ve had the misfortune of knowing.

Because Ive said it once and Ill say it again. Caregiving isn’t just about having a big heart and finding joy in knowing you helped someone. It’s about sacrifice. It’s about reading a book for the fourth time no matter how much you want to throw it out the window. Or rubbing someone’s feet to distract them from the pain no matter how little sleep you’re running on. Or missing out on parties and events no matter how badly you want to go. Or suppressing your gag reflex as the one you love spits up something absolutely gross. Or mustering the strength to decide whether you should endure the anger being vented at you because everyone needs to vent, or whether you should call your loved one out on their self-pity lest their anger become an abusive habit. Caregiving is about testing your patience until it inevitably wears thin and you make a mistake or lash out, ensuring you’ll be up the next several nights wondering whether you just scarred someone for life. Caregiving is work and, regardless of whether it is paid work, it is one of the most psychologically taxing kinds of work there is.

Yet blood is still thought to be thicker than sweat, as the stigma of non-biological families persists. This traditional obsession with genealogy on a grand scale has led to classism and racism and aristocratic inbreeding and the sterilization of disabled people. On a smaller scale, it’s led to parents and children pushed to the brink of tears as they endure, again and again, some loudmouth’s opinion about “real” families.

Which is why I propose a challenge for all those well-intentioned supporters of “traditional marriage.” I won’t ever call you a bigot—if anything because name-calling has a pretty low success rate when it comes to changing society for the better—but do me a favor. Walk up to a childless couple planning to adopt and tell them that you’d like to see their marriage invalidated. Say it to their face. Tell them that their marriage is “wrong” or “not right” or less than or whatever it is you’ve been lead to believe is “real” because they didn’t use their own genes to make their children. Then visit them again after they’ve adopted and tell their kids about your wish to replace their parents’ marriage with a separate-but-equal civil union. And then tell me with a straight face that what you’ve said to them about their family is “much-less-problematic” than what Jim Crowe said about our president’s family.

Speaking of the president, he may have said it best: “What makes you a man isn’t the ability to make a child, but having the courage to raise one.”

 

 

How to Help Your Doctor Get the Job Done

23 Mar

(Via)

 

If you’ve ever had to undergo strings of medical tests or lengthy procedures, you know that there are plenty of doctors, nurses and technicians out there who could do with a few lessons in etiquette and bedside manner. I could spend years on this blog documenting every moment I was snapped at, interrupted, or made to feel like a nuisance while I was fretting about test results or mounting pain. It would take me a decade to do justice to all the horror stories I’ve heard from friends and fellow patients.

But the poor manners of all those (probably overworked) professionals who made a tough situation worse render the kindness of others all the more dazzling. (I love you, Nurse Wilson!) And it’s crucial to bear in mind that the patient’s version of things is only one side of the story. Medical professionals rarely get to see people at their best – their job is to witness and inflict pain all day. They must remain objective while navigating a sea of misery and fear, where not everyone claiming to be severely sick really is.

In order for doctor and patient to have the best possible experience, both have to be aware of what the other requires. Which is why I’m handing over the mic to Dr. Leana Wen, who’s penned an excellent article called “The 10 Types of ER Patients” this week. Her pieces of sound advice include:

No. 3: The Googler. The Internet can be a powerful tool for empowering patients, but please use it responsibly. Looking up your symptoms yourself might turn up that you have a brain tumor when you have food poisoning or that you are pregnant when you have belly pain (and you’re a man). Use the Internet to help you understand your diagnosis and treatment and to come up with questions—not to diagnose yourself.

No. 4: The “Pain All Over” Patient. We call it the “positive review of systems” when you say yes to everything we ask. Headache? Chest pain? Shortness of breath? Fatigue? Muscle aches? Yes, yes, of course, yes. Some illnesses really affect many parts of the your body, but more often than not, patients will say yes to convince us they are ill. We know you aren’t well, so tell us the truth. (If you don’t, you run the risk of undergoing unnecessary testing.) If everything hurts, try to tell us your story. When did you last feel normal and well? What happened then? And please don’t exaggerate. If you say that your pain is 15 out of 10, but you’re eating lunch and texting on your iPhone, it’s hard for us to calibrate your symptoms.

Head over to Slate to read the whole thing.